The Unexpected Beginning

~I always wanted to write this story down for Derrin.  Even though this started with his Dad and myself, it's his story too.~

No one told me that after getting married, my life would turn completely upside down for awhile. Or, maybe they did, but I only heard what I wanted to through my 'love-plugged ears'.

Our First Dance

~.~
We were married in December. We moved an hour and a half away, away from my family. I quit a job I loved, and found a new job at an office doing data entry in an insurance office. I put myself on birth-control pills, as having kids was something for WAY down the road.

We had a plan: Live cheaply, save money, and eventually use all that saved money to travel through Europe together. Maybe not the most grown-up plan, but we were young and that was THE dream. The minute we said "I do", we knew it was just the first step to making the dream happen together.

Only things didn't turn out quite like that dream. The pills made me crabby. REALLY crabby. I was looking at Derrick (who I had known for four years) and wondering WHO IS THIS. It seemed to me that he was spending way too much time playing video games, messing around with his friends (heaven forbid!) and being a drummer in a band (on the weekends, but still WAY too much for my frame of mind). Where were all of the deep conversations I had envisioned, and where were the late nights spent dreaming out loud about our trip to Europe and anything else we wanted the future to hold for us? The more crabby I became with him and the more crazy the pills made me, the more he wondered who HE had married. This girl was mad about everything.

My new job wasn't everything I had hoped for. My new boss gave me more work than I could ever handle, and she was always at my back wanting me to work faster. I had my first migraine a week after I started that job. I'm sure the birth control pills were partially to blame, and the stress didn't help. But the job was going to stay. We were a new, young, married couple with new bills to pay, and we needed my income. Plus my job had an awesome insurance plan. Quitting wasn't an option I gave myself, at least not at that point.

~.~

We limped along kinda miserably for the first three months we were married, and then something COMPLETELY unexpected happened: Guess what Mom and Dad, we're pregnant! Didn't see THAT one coming along, did ya? I'd even been told from three different gynos that conceiving was going to be difficult for me because of a very irregular cycle. The birth control pills must've helped me become all primed and ready for motherhood.

I brought the stick test out to Derrick. He grabbed it out of my hands, not comprehending, and then spent the next half-hour reading the directions, trying to make sense of the two lines that meant 'a baby is in your future'.

So, there we were, pregnant after being married for three months. Life just kept moving forward. I still had to get up every day and go to work, only now I got to be there with morning sickness.  I'd have to call in sick sometimes.  My boss would demand I make up any missed time on weekends. I lived for the two fifteen minute breaks we were given and lunch time (a whole hour!). I'd make my way out to my car, lay down and gratefully pass out.

7 Week Embreyo

So, that was my life. Get up, go to work, and count the minutes until I could leave again. Go to work whether I was sick or not. We REALLY needed the insurance that that point. I felt trapped by the situation.

Most people start to feel better around three months- not me. I slugged along. I just assumed this was what being pregnant was like. My gyno didn't seem too concerned. My boss didn't cut me any slack. My poor young husband didn't know any better.

At about five months I got even sicker. I was still throwing up, but now I had a horrible cough that I couldn't control, I was feverish off and on, and my energy plummeted further. I'd cough so hard I couldn't catch my breath. Since I needed the job and it's insurance so bad (I thought), I continued to drag myself to the office.
~.~

I kept waiting for someone to tell me what I already knew: I needed to be at home in bed. But no one ever told me that. I needed more alternatives, I needed someone to help me figure it out. But no one did, and I don't remember ever asking for help.  In retrospect, I should have taken action myself- put myself to bed, and made the move to protect my health and my child's health.  I've learned since then that taking care of myself is MY job. 

I hate to think of how I took care of myself through-out that time. My diet was horrible.  I had no concept of nutrition, and honestly I was too far into survivor mode to make the effort I should have to take care of myself and my unborn baby.

My boss decided that instead of data entry, she was going to have me start pulling old files for missing information. That job mostly consisted of moving heavy boxes around to get to the right files. It was a lot of lifting for someone who couldn't hardly sit for 15 minutes without a bathroom break to throw up and have a breakdown.  It definitely wasn't a job for someone obviously struggling with a difficult pregnancy.  I still don't know what she was thinking.  I do know now, after thinking about it for 10 long years, that she was a bully.  An older me wishes I would have stood up for myself.  I say this to my kids all the time now (and I quote Dr. Phil here, in all his glory):  "You teach people how to treat you."  I believe that will all my heart.

~.~

At twenty three weeks we had the ultrasound that told us we were going to have a son. I was happy, but also a little detached- it still didn't feel like it was real. My stomach hadn't really grown that much yet, even by then. It seemed like I was growing everywhere else though. From that point on I watched the bathroom scale climb steadily day by day. I couldn't understand it, because I still wasn't even wearing maternity clothes yet; I was just going up regular sizes at an alarming rate. My hands and feet, and especially my face were getting bigger. I couldn't hardly recognize the girl looking back at me in the mirror. I was still sick, and coughing.

23 Weeks: A BOY!

I don't know if this is a common experience, but the clinic I went to seemed to think that because I was pregnant, I was also over reacting. The feedback from the staff who answered the phone (because the doctor was completely inaccessible) was, "You're pregnant. Of course you feel like crap. Suck it up, Buttercup."

They eventually gave me an inhaler (to help me calm my coughing fits so I could breath again), probably just to get me off of their backs.  Once again, if I was in that situation today, I would have found a clinic willing to treat me as seriously as I deserved to be treated.

~.~

One of the worst things during that time was how out of it I felt. It was like my brain was just GONE. One time I went into a bank intending on withdrawing some money, and they couldn't find my account. I was flustered and frustrated, and they looked and looked but found nothing even close to my name in their computers. I finally looked around and saw a bank sign (after about ten minutes of having them look) and realized that I was in the WRONG BANK. Upon realizing my error, I told the teller I would just come back later, and I squirmed on out.  Now I know that it wasn't just being pregnant that was making my brain shut down.  My body was trying to send me yet another signal that something was very wrong with it.

My mom took me to the mall at 25 weeks to buy me some maternity clothes, even though my stomach wasn't really showing. It made me feel better to at least be wearing clothes that acknowledged I was pregnant and not just getting fat.

When I finally went in for my 26 week doctor's visit, I was at the end of my rope. I was sick: Sick of being fat, sick of work, just plain sick. My list consisted of


My Very Long List of Complaints


My list looks exactly like what you'd find if you were to google 'preeclampsia'. The first thing my doctor had me do after reading my list was take a urine sample. Yep, protein in the urine. My blood pressure was through the roof. Preeclampsia it was.
Continued in next blog...

Preeclampsia and The Very Little Baby

During my 26-week prenatal doctor appointment, I found out I’d developed severe preeclampsia. I had tell-tale protein in my urine, my blood pressure was through the roof, and I’d gained a huge amount of weight freakishly fast. It was an acknowledgment for what I’d known for awhile: something was WRONG.

I was sent home on bed rest but the following Monday my blood pressure was higher than before, so they decided to admit me. I assumed I’d be in the hospital for a couple days; they’d get my blood pressure under control and then I’d go home for the rest of the pregnancy.

I was put on a magnesium drip as soon as I settled into my hospital room. The magnesium made me very relaxed and warm. Everyone else was buzzing around me, scared, but I was A-OK. Derrick showed up, scared, confused and tired. This had been a hard pregnancy from the beginning.

Both of our families were in and out of the room. Between the magnesium drip, the company, and the relief of not working, I was feeling better than I had in months. I wasn’t opposed to the idea of just staying in that room for the next three months if I needed to.

That wasn’t going to happen.

The blood tests the doctor ordered showed that my condition was getting worse. The doctor kept saying something about worrisome “leaky vessels.” I was developing something called HELLP Syndrome, which was causing my liver enzymes to skyrocket. The small capillaries within my kidneys were leaking. The danger of liver failure, seizure and coma were very real.

No one told me what all of this meant because worry was the last thing I needed. Not that I could have been bothered to worry; I was still all rainbows and butterflies on my magnesium drip. Even after my sister told me to prepare myself, I didn’t understand the magnitude of the problems.

~.~

September 28th was a Thursday morning. The doctor came in and announced it was time to have a baby, as continuing the pregnancy would be too dangerous for both myself and my baby. I was only 27 weeks along- three full months too early.

Right before going in to surgery.

They wheeled me into the operating room. Derrick stood up by my head, holding my hand. They wheeled me into the operating room for the c-section. Derrick stood up by my head, holding my hand, while I felt tugging and pulling for only a few minutes. One minute the little baby was inside my belly, the next minute I heard a teeny tiny cry. It sounded like a kitten.

All of the action was then diverted to a different part of the room as the NICU staff went to work saving my baby.

They sewed me up and as they started to wheel me out of the room, they paused briefly so I could look over at the baby laying under the bright lamp on the table. He weighed in at 1 pound and 10 ounces. He was bright red – his skin looked too undeveloped to have color, like it was transparent to the organs underneath. He didn’t look real. The amounts of magnesium in my body made me feel extremely detached, like this was all happening to someone else; this was some other girl and her baby.

They wheeled me back out of the room. I didn’t see him again for another four days. His daddy and grandparents saw him a lot those days (His Auntie Renae tried to slip into the NICU too, but got caught. Only parents and grandparents were allowed in there). He was hooked up to a lot of machinery, and struggling to breathe, but he WAS breathing.

They took me off of the magnesium and eased off the pain medication. By removing my baby from my body, I was out of harm’s way and on the mend. Now it was time to help him heal, too.

When I was finally able to walk from my room to the NICU to see my baby, they led me over to his tiny bed where he laid on a sheepskin blanket, tubes coming in and out of him to help him breathe. His color was better – not as red. He was wearing a diaper the size of a panty liner and it completely engulfed him. I pulled the hat he was wearing gently away from his head to look at his teeny ears. They were completely flat against his head, like they’d not had time to curl up into regular ears yet. He didn’t even have nipples yet. He just wasn’t done cooking.

First Trip to the NICU

After that I was in the NICU constantly watching him or gently laying my fingers on his back. I needed to touch him, but I was warned by the NICU nurse not to stroke him because his undeveloped nervous system couldn’t handle the stimulation. So I just held my hand across his back gently and felt the rise and fall of his lungs gasping for air.

Eventually, we were able to hold him. We’d hold him skin on skin against our chests (it’s called “kangerooing”), careful not to move too much. Even though he was still struggling to breathe, we were told it was more dangerous for him to lay there and not be held – even babies that premature need to feel human connection and love.

We named him Derrin, after my brother whom I’d lost when I was 8. It was the most special name I could have given him.

The day I was discharged was bittersweet – it was nice to get out of the hospital and sleep in my own bed, but it felt horrible to leave Derrin there.

I pumped milk frantically because it was the best nutrition he could have, but the results were seriously pathetic. I worked for HOURS to get minuscule amounts of milk. I’d bring it into the NICU, write our name on the little baggy, and put it in the freezer with the gallons of milk the other moms were producing.

I was put on medication to help me produce more and got in contact with the Le Leche League folks who gave me lots of advice. They set me up with a top of the line, grade-A breast pump but, still, I could only produce thimble-fulls. I kept at it, pumping those thimble fulls, supplementing with formula when necessary. I was sad I couldn’t produce more, but what I gave him made me feel connected to Derrin; a little more like I was his mom. While the nurses did the lion’s share of keeping him alive, I was the only one who could bring thimbles of real mommy milk.

First Bath

There were good days where he’d do really well…and there were other days where his whole chest would almost collapse while trying to breathe. Those days I felt helpless.

The nurses noticed that even though he was the smallest baby there, he was also one of the most stubborn. They’d arrange him just so, his body positioned perfectly to help him breathe, but he wiggled and rearranged himself. That little dash of stubbornness amused and comforted me; it was one more thing to help him pull through this.

He’d open his little eyes when we were there, whenever he heard our voices. His grandparents, daddy and I all read to him whenever we went to visit. We all held him close to our skin and rocked him while holding oxygen to his little face.

Gramma Patsy and Derrin

 For the most part, we had a happy little routine for that first month. He steadily gained weight, his breathing became less of a struggle, and nothing majorly wrong happened. I realized we were very fortunate, as I saw a lot of other babies in the NICU undergo surgeries and have scary things happen. I attended the funeral of one little baby, and we all just held our breath and prayed for the best.

~.~

I had the whole “why did this have to happen to US?” moment when one of my friends who’d been due two months before me came in to have her baby. She had a perfectly happy delivery and brought her baby home right away. It’s not that I bemoaned her happy delivery; it just hit home that what had happened with us was just so far away from the joyous event it could have been.

~.~

I took many pictures of Derrin. Since I couldn’t take him home to show him off I carried pictures everywhere. When he was two months old, I took some pictures and developed them right away. When they came back, I realized his skin looked very yellow. I hadn’t noticed that when I had been in the NICU.

I went back to the hospital, and the neonatal doctor was by his side, checking him out. They’d run blood tests and discovered that he had CMV (cytomegalovirus), which was causing jaundice. He could have contracted it from me during birth or from my breast milk (aw, sweet irony). CMV is very dangerous for preemies, potentially causing neurological and developmental problems, deafness and blindness. It was also very contagious, so he was moved out of the NICU and up to the third floor where he had his very own NICU nurse with him at all times.

The move actually made it a lot easier for me for be able to stay with him. I had stayed several times in spare rooms they kept for NICU moms, but now I could actually sleep in the same room with him.

His jaundice was under control fairly quickly, and he just kept trucking along. I quit trying to pump around that time, which was emotionally hard; my milk production had never really kicked in. Pumping isn’t that effective at spurring prolactin production which helps the milk to flow, and my poor little baby was still too undeveloped to have a suck reflex.

Auntie Nae and Grampa Billy

He had to gain more weight and learn to drink from a bottle. He got most of his formula from a little tube that went up his nose and down into his tummy until we found that if we held him just so and had a plastic bottle, we could squeeze streams of formula into his mouth and coax him to swallow. We did that for a week and HE PUT ON WEIGHT! We were thrilled!

Finally, they gave us the go-ahead to bring him home. It was December 28th – his original due date – exactly three months after he’d been born. It was also one of the happiest days of my life.

Feeding Tube

Unhappy about the Car Seat
But GOING HOME!!!

Bringing him home was also very scary. He’d had TEAMS of people keeping him alive for the last three months, and now they were just going to send him home with US? What were they thinking? But we did it!! His daddy and I took turns, waking up every three hours to feed him the thick, extra-calorie formula. Our poor little guy would throw it back up more often than not, and we’d start all over again. Derrick and I were walking zombies for quite awhile.

I had to take him to neurological testing and also eye and ear testing for the next two years because of the CMV virus and prematurity, but he quickly caught up to other babies born the same month as him and he always tested very high on the tests. He is one smart boy.

Now he is ten. NOW when I think about everything that could have happened my heart stops. You would never even guess that he was a micro-preemie by looking at him. He  is SO good with other people- serious social skills. I am always in awe when I watch him with other people. He genuinely just loves them. We have a theory that it's because he was exposed to so many people right from birth. He’s the healthiest person in our family; he loves to read, he’s in advanced math, and with some encouragement, he gets great grades.

He is the kind of kid who will wake up early and make his mommy the perfect cup of coffee just to be sweet. I am so BLESSED to have Derrin in my life.

I was able to stay home with both Derrin and his little sister when she was born.  All of those worries that we couldn't make it financially if I wasn't working just weren't true for us.  We figured out a way to make it possible, and even though being a stay-at-home mom of two small children was the hardest job I ever had, those years I was able to do it are some of the happiest of my life. 

                                                ~.~

My Baby Boy- Age 10

I think about the dream that Derrick and I had in the beginning, and of course we'd still love to travel the world some day, but the life we have with our kids is so much better than any dream we ever could have imagined.   Of course we've had our ups and some pretty hard downs, but I wouldn't trade it.

~.~

I know not all moms and their preemies are as fortunate, but I like tell Derrin’s story to new moms who are going through this scary situation because in our worst moments, it helped to hear positive outcomes of those who had been through it before me.

When we first had Derrin, one of the NICU nurses told us that someday this would all seem like a dream from a long time ago.

She was right.